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Thursday, October 11, 2018

On Monday afternoon, I laid in my bed with aching joints. The pain was particularly severe in my fingers, hips, and jaws. I vomited. I moved from my bed to the carpet for a bit because my intestines felt as if they had been put through a meat grinder.

I felt like meat.

I also felt like an intruder on my university's campus, in a world of bright-eyed students who are all seemingly healthy and energetic. I had the eerie sense that I had been one of them just a few days before, but then I felt like I was invading their upbeat space with my limping and fatigue.

While the onset of this global pain, stiffness, acute nausea, and headache felt sudden to me, I knew it was likely the result of skipping my medications the weekend before, which caused me intermittent problems last week. For example, on Saturday morning, I was at an event in which we had to draw the basic outline of a body, and then answer specific questions that were divided into six categories. The categories represented the head, the heart, each hand, and each foot. I wrote out my answers to the head and the heart, and then I had to stop writing. My hands hurt too much to answer the questions for each hand and each foot. The time for writing was up, and I had spent most of it staring at the little that I had completed and looking around enviously at how full everyone else's page was.

I scolded myself for being jealous of hands that don't hurt, but the line between jealousy and embarrassment is extraordinarily thin, and so I also found myself instinctively trying to cover up my incomplete sheet with folded hands and a book. I was terrified that someone would see that I had only finished one-third of what was assigned, and would think that I wasn't taking it seriously. I was afraid that perhaps they would think I only cared enough to complete one-third of an activity they designed. I was afraid of being perceived as the nineteen-year-old who thinks she is too good for a task, particularly when quite the opposite was true. I literally was not good enough to write a few more sentences. It was not until that night that I thought about how cruelly appropriate this situation was. I can pull together the head and the heart in the midst of a flare, but the limbs are in jeopardy, and I fear that the failure of the limbs makes people question the head and the heart.

On Monday night, during a tearful phone call to my mother, she offered to allow me to dictate to her an essay that was due the next day. I would do the talking, she would do the typing, and I would exit the deal with a completed paper. She is a saint, but I could not take this offer. "My brain doesn't work like that," I insisted, feeling my eyes growing puffier and my cheeks damper, knowing that so much of my process of writing involves reading the sentences over and over again, rearranging them in whatever way is most impactful. For me, being an English major primarily consists of a lot of reading and a lot of staring at words until I figure out how to make them come to life. In the context of literary analysis papers, my brain is no good without my hands.

My health improved after Monday, and I was progressively feeling less like meat and more like a living, breathing human being. My mom and sister whisked me away from campus on Tuesday night and into a movie theater, which I think gave me some humanity points back. A friend who knew I was struggling called to give an "admittedly dramatic, but listen anyway because this will help both of us" account of her terrible professor. I didn't cancel any plans with friends, even when I didn't feel like hanging out. I felt more and more alive, not only because I was in less pain, but because I was surrounded by people who acknowledged and lived into my wholeness when I could not.

The stormy weather today, however, did me no favors. On my walk home, wind forced me to clutch my umbrella so tightly with my sore, arthritic fingers that I could have burst into tears at any moment. My hips, knees, and ankles felt like they might execute a coordinated attack to bring me crashing down into the concrete rivers. My jaw and elbows felt puffy. When I finally got back to my room, I peeled off wet clothing, opted for pajamas, and crawled under my heated blanket as quickly as I could. Heat is not a cure, but it has helped. I will take what I can get.

The only thing better than a heated blanket is a heated blanket plus this cutie!

My hands and feet cannot seem to keep up with my head and heart. I've spent more time that I would like today trying to synchronize all the parts of me. It takes more effort than I can describe. Tonight, I am grateful for people who trust my head and my heart, even when my hands and feet are failing. I am grateful for the team that works to try to get my body to function normally, so that I can live into all that I think and love in practical ways. I am grateful for my mom, who offered to step in in a tangible manner when the dissonance between my brain and hands seemed irresolvable.

I am unsure whether or not anyone noticed how incomplete my Saturday morning answers were, floating in isolation on a mostly blank sheet. I hope that if they did, they decided to trust my intentions. I hope I remember how much I rely on this grace. I hope I extend it to others.

Meet the Author

Rachel Sauls

Welcome! I'm Rachel, a 19-year-old college junior from North Carolina. I blog about juvenile rheumatoid arthritis, life, and all of the intersections between the two. I'm so excited that you're here and I can't wait to get to know you!